A life worth living: Continuation of clinically assisted nutrition and hydration in an incapacitous but sentient man

Mostyn J’s judgment in a novel case concerning withdrawal of life sustaining treatment in the Court of Protection’s first ever Skype trial

In a trial lasting three days, conducted entirely remotely through the medium of Skype, no one could fail to be moved when watching a video clip of a man in his seventies, known as “AF” in these proceedings, moving his hand rhythmically, marking the beat to the tune of Irish Eyes. What made this so poignant was that AF had suffered a catastrophic stroke in May 2016 which rendered him severely disabled and incapacitous, but still sentient and, as the Judge observed, AF was plainly enraptured listening to the musician playing before him.

This very sad case found its way into a newly-styled virtual courtroom the day after Boris Johnson urged the nation to avoid non-essential contact in the midst of the Covid-19 pandemic. Thus began the first ever remote trial on the most sensitive of issues – should AF continue to receive life-sustaining nutrition and hydration via a percutaneous gastrostomy (“PEG”) or should it be withdrawn, a decision which would almost certainly lead to his death.

He told his daughter that he would not want to be kept alive as a “body in a bed” As noted by Mostyn J “this language is reminiscent of the description of Tony Bland by Lord Goff as a “living corpse”

AF was described as a strong and fiercely independent man who had had a satisfying career in the NHS. This experience had made him acutely aware of how illness could permanently blight the lives of patients and render them incapable of living an independent life, something which was of significant importance to him. Shortly after his wife had died, he told his daughter that he would not want to be kept alive as a “body in a bed” [18]. However, although he had made a Will, he had not gone as far as making an advanced decision pursuant to sections 24 and 25 of the Mental Capacity Act 2005 (“the Act”) to give effect to his wishes and feelings.

Importantly, AF was noted to be sentient and capable of eating and drinking (though not enough to sustain his life), communicating, gesturing, enjoying poetry and visits from animals and children. This is in stark contrast to the majority of cases that have come before the courts, where the patient has been diagnosed as being in a minimally conscious state or a permanent vegetative state (i.e. a prolonged disorder of consciousness). The Judge noted this distinction and concluded that AF’s existence, whilst impoverished, was not without appreciable pleasure.

The central issue in this case was whether or not it was in the best interests of AF to continue to receive clinically assisted nutrition and hydration (“CANH”). There were strongly held opposing views on this - AF’s daughter, SJ, firmly believed that CANH should not continue any longer, basing her view on her father’s previously expressed wishes not to become a burden or ‘a body in a bed’, wholly dependent on others for his care, with no prospect of a meaningful life. SJ’s evidence was clear that she was “fighting for his right to die” because she believed that is what AF wanted [3].

Further, during AF’s initial admission to hospital, he had on occasions refused food, stating he wanted to die. Although expert evidence suggested that at the time such statements were made AF had lost capacity, SJ believed that this reflected her father’s true wishes. However, those past wishes did not suggest that AF had contemplated the specifics of his current predicament and the disabilities arising from the stroke; here the Judge found it impossible to conceive that AF “would ever have written an advance decision mandating being starved to death were he to find himself in his present position” [20] and as such, Prince Hamlet’s question ‘to be or not to be’ would have to be answered by him on behalf of AF [3].

A life enriched by poetry, Rupert Brooke, Siegfried Sassoon and Wilfred Owen. She told me that these “really hit the spot”

Conversely, the GP, who was the decision-maker for the purposes of the Act and had cared for AF for over three and a half years, considered that it was in his best interests to continue to receive CANH, based on his evaluation of AF’s circumstances [28]. It was noted that although AF received CANH via the PEG, he would also eat certain foods including doughnuts, chips, toast, cake, and enjoy drinks such as coffee and hot chocolate; there were no recognised triggers for when he would eat or when he chose not to.

The views of those caring for AF were aligned with those of the GP. They observed that AF enjoyed visits to his room from a Labrador and a Shetland pony, and relished the company of young children, related to the carers, who came to visit. They reported how AF seemed to enjoy listening to music, watching television, especially when the Irish rugby team were playing, and tuning in to an Irish radio station. The activities coordinator read AF poetry which ‘really hit the spot’ such that he became emotional and his eyes filled with tears. The carers thought “it is unthinkable that AF should be in effect starved to death” by the withdrawal of CANH [31].

Mostyn J decided on the evidence that it would not be in AF’s best interests to discontinue CANH but declined to analyse in depth the impact of article 2.1 of the European Convention on Human Rights (ECHR) and what he described as “the somewhat impenetrable meaning of section 4(5) of the Act[2]” concluding that these provisions were not directly relevant to his decision[3][5].

AF’s life is markedly diminished but...it is still a life which has intrinsic quality

In concluding, Mostyn J held that the requirement to consider the factors under s4 of the Act was an exercise that was “quintessentially an evaluation rather than an exercise of discretion” [12]. He acknowledged that Article 2 ECHR and s4(5) of the Act fortify the very strong presumption in favour of the preservation of life, but focused on the following propositions [14]:

When assessing best interests, the exercise is first and foremost to consider matters from the point of view of the protected party: Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 at [45].

Welfare must be assessed in the widest sense, not merely medical but social and psychological also: ibid at [39].

While there is a strong presumption in favour of the preservation of life this can in an appropriate case yield to the need to respect personal autonomy and dignity of the protected person and his right to self-determination: ibid at [35].

Of, at least, equal merit or importance is the principle of preservation of human life, as well as the fact that while AF’s present life is markedly diminished compared to his life before his stroke, it is still a life which has intrinsic quality and from which he appears to derive appreciable pleasure.

The workings of an incapacitated mind are a largely undiscovered country

In taking into account AF’s wishes and feelings, his Lordship noted that virtually all of the expressions of wishing to die whilst in hospital were made after his stroke when he had lost capacity. He added that the weight the court gives to such wishes must take into account the fact that they were expressed when AF had lost capacity when “the workings of an incapacitated mind are a largely undiscovered country” [16], with which the experts all agreed.

Mostyn J considered it impossible to understand the true wishes and feelings of someone who had a grossly incapacitated mind and that it was important: “when judging AF’s present quality of life... to keep at the forefront of one’s thinking that it would be fallacious to seek to judge the processes of his mind by the standards of a capacitous mind” [16].

In the final analysis, the Judge found it impossible to answer the “hypothetical and counterfactual question” of what AF’s beliefs and values would be if he had capacity today [31]. He took full account of the views of AF’s daughter and family, the GP and the carers at the care home, as well as experts in neuro-rehabilitation and neuropsychiatry and reached the very clear conclusion that “it would be categorically contrary to AF’s interests for him to be set on the path that will lead to his inevitable death”.

[2]In short, the effect of s.4(5) of the Act (which provides that “where the determination relates to life-sustaining treatment [the decision-maker] must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death”) does not preclude the court from making a welfare order/declarations which would have the effect of bringing about death-see Briggs v Briggs & Ors [2016] EWCOP 53

[3]The author’s view is that article 2 ECHR enjoins the State not only to refrain from the “intentional” taking of life, but also to take appropriate steps to safeguard and protect the lives of those within its jurisdiction (Lambert and others v France (2015) 62 EHRR 2 at §117). There is thus an imposition upon the State of both negative and positive obligations and, it logically follows, a distinction to be made between them. But the withdrawal of CANH does not amount to an “intentional” taking of life: NHS Trust v A [2001] 2 WLR 942, [2001] Fam 348 at §30 per Butler-Sloss LJ. A best interests’ assessment, properly conducted under English law and in accordance with established principles, is fully compliant with the ECHR. The determination of “best interests” under section 4 of the Act is a wide enough test to encompass all relevant factors in Articles 2 and 8: In re M [2012] 1 WLR 1653 at §86 - §96 as per Baker J.